Dataset Information

Using medical words with family caregivers.

ABSTRACT:

Background

Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.

Objective

This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.

Design

Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word placement (statement or question), whether or not the word was explained, and the caregiver's response to the word.

Setting/subjects

As part of an ongoing randomized clinical trial in the midwestern United States, informal hospice caregivers participated in recorded hospice care planning discussions.

Measures

A selection of videorecorded interactions from an ongoing study was analyzed.

Results

Hospice team members used six times as many medical words compared to caregivers. The majority of medical words used by caregivers and team members were drug names. Medical words were predominantly used as statements rather than questions that sought clarification. Three-fourths of medical words used by team members were not explained to caregivers. Caregivers provided little response to medical word use, indicating a lack of understanding.

Conclusions

The propensity to use medical words during clinical communication with family caregivers is cautioned. In order to recognize the caregiver as a contributing team member, clinicians should limit the use of medical words, provide lay explanation alongside medical terminology, and use questions to check for understanding. More research is needed to determine assessment tools to capture the caregiver's level of understanding of medication and pain management protocol.

SUBMITTER: Wittenberg-Lyles E

PROVIDER: S-EPMC3776621 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Using medical words with family caregivers.

Wittenberg-Lyles Elaine E Goldsmith Joy J Oliver Debra Parker DP Demiris George G Kruse Robin L RL Van Stee Stephanie S

Journal of palliative medicine 20130812 9

<h4>Background</h4>Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.<h4>Objective</h4>This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.<h4>Design</h4>Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word place ...[more]

PMID: 23937064

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Project description:BackgroundWe previously developed a mobile health (mHealth) app (Roadmap) to promote the resilience of family caregivers during the acute phases of care in patients undergoing hematopoietic cell transplantation (HCT).ObjectiveThis study explored users' perspectives on the uptake of Roadmap's multicomponent features and the app's utility in promoting resilience.MethodsFifteen participants were randomized to the full version of the app that included resilience-building activities and the other 15 were randomized to the control version that included a limited view of the app (i.e., without any resilience-building activities). They were instructed to use the app for 120 days. Semistructured qualitative interviews were then conducted with users as part of an ongoing, larger Roadmap study (NCT04094844). During the interview, caregiver participants were asked about their overall experiences with the app, frequency of use, features used, facilitators of and barriers to use, and their perspectives on its utility in promoting resilience. Data were professionally transcribed, coded, and categorized through content analysis.ResultsInterviews were conducted with 30 participants, which included 23 females and 7 males. The median age of the population was 58 years (range, 23-82). The four main themes that emerged included app use, ease of use, user experiences, and ability to foster resilience. The subthemes identified related to facilitators (convenience and not harmful), barriers (caregiver burden and being too overwhelmed during the acute phases of HCT care), resilience (optimism/positivity and self-care), and app design improvements (personalization and notifications/reminders).ConclusionThe qualitative evaluation provided insights into which components were utilized and how one, or a combination of the multicomponent features, may be enhancing users' experiences. Lessons learned suggest that the Roadmap app contributed to promoting resilience during the acute phases of HCT care. Nonetheless, features that provided enhanced personalization may further improve longer-term engagement.

Project description:Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta’s Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers’, providers’, and leaders’ recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers’ role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers’ health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers’ immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

Dataset Information

Using medical words with family caregivers.

Background

Objective

Design

Setting/subjects

Measures

Results

Conclusions

Publications

Using medical words with family caregivers.

Similar Datasets

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